TSA Congressional Briefing 2006

TSA Youth Ambassadors Call on Congress for Action at Fourth annual TSA Congressional Briefing

TSA held its fourth annual Congressional Briefing on Thursday, March 2 at noon in the Senate Russell Caucus Room in Washington, D.C. TSA’s Youth Ambassadors discussed growing up with Tourette Syndrome—and the crucial educational issues that face students with the disorder—with Members of Congress and their staff. The young spokespeople emphasized the importance of continued governmental support and funding of the TS education and research program at the Centers for Disease Control and Prevention (CDC).

TSA Youth Ambassadors Jackie, Colin, Conor and Aungeni

Three of the young stars, Aungeni, Conor and Colin from the HBO-TSA documentary, “I Have Tourette’s but Tourette’s Doesn’t Have Me,” were on the panel and spoke from the heart about what it is like to live with TS.

Colin began by correcting a common misconception about TS. “I bet most of you may think of TS as the disorder that everyone swears… but this is untrue. Most of you may believe this because in the past the media portrayed it as such, but we are here to dispel that myth.” His co-star Conor appealed to the emotions in the room, “I don’t want to be felt badly for; I just want to be an average kid who has a little side effect.”

Jackie Baker has spoken frequently in her 11 years about TS. She offered thoughtful input, worthy of someone many years her senior. "It is really important that we have been given this chance to explain to you what TS is like. It is very hard to express all the feelings I have - it's like I can only give you a hint of how it feels. TS is confusing and people often can't figure out what it is that I can control and what I can't. Sometimes I can't figure that out! I just want to be seen as a kid - not a kid with TS or a kid with disabilities."

Aungeni explained a little about her own symptoms, “My vocal tics are when I make noises, and my motor tics are when I move different parts of my body in strange ways. Through it all I don't ever let it get me down.”

In addition to the first hand experience of the young people with TS, the congressional representatives and their staffers heard from experts on the subject, including: John Walkup, M.D. from Johns Hopkins Hospital, Division of Child and Adolescent Psychiatry, who gave a medical overview about symptoms, treatment and diagnosis of TS. David Koch, a television production assistant for HBO from New York, spoke about growing up with TS. Monte Redman, the Chairman of the TSA Board of Directors was on hand to make introductions.

The event was graciously hosted by Mistress of Ceremonies, Margaret Bush, sister-in-law to President George W. Bush. Ms. Bush is a longtime supporter of TSA and has once again generously donated her time for the event, participating in every TSA Congressional Briefing to date.

In addition, the TSA Youth Ambassadors met with their local Congresspeople to discuss TS and need to local awareness and education.

Conor with

Congresswoman Eleanor Holmes Norton

Aungeni with Congressman Patrick Tiberi


Colin and Aungeni with Senator Mike DeWine	Colin with Congressman Sherrod Brown